“It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram

Abstract

This empirical study draws on insights from narrative theory to tease out how women with a contested illness narrate their experiences on social media. Based on 13 months of online observations between 2017 and 2019, I analyse how a sample of eight highly active Dutch female social media users share their illness on YouTube and Instagram. In addition, I interviewed five of them. Through their online performances, the women in this study illustrate their investment in self-care practices, whilst simultaneously laying bare the limits of these practices in ensuring permanent well-being. Central to transmitting their experiences is the performance of balanced positivity; meaning that illness is dealt with in a predominantly ‘positive’ way, as well as through the occasional display of (moments of) hardship. I identify three main aspects of this performance of balanced positivity, namely: (1) appearances, (2) mindset, and (3) presence. The practice of balanced positivity is congruent with the concept of legitimacy narratives, because it allows women with a contested illness to show their efforts to cope with their condition as well as the myriad challenges that remain despite these efforts.

“They say it’s because I’m migrainous. . .” Contested identities of students with invisible disabilities in medical consultations

“…These findings are also congruent with other studies on contested conditions which demonstrate the patients' vulnerability in front of the symptoms, despite their efforts to overcome the challenges (e.g. Groenevelt, 2021). In particular, although the students often adopt a rather active approach to their illness management, demonstrating their active engagement in self-diagnosis and decision-making processes, or their struggle to overcome barriers, they often construct passive identities in relation to their conditions, with symptoms constructed as if coming from the outside, and affecting their lives directly (cf.…”

“…In particular, although the students often adopt a rather active approach to their illness management, demonstrating their active engagement in self-diagnosis and decision-making processes, or their struggle to overcome barriers, they often construct passive identities in relation to their conditions, with symptoms constructed as if coming from the outside, and affecting their lives directly (cf. Groenevelt, 2021;Paxman, 2021;Sowińska, 2018Sowińska, , 2019.…”

“…Braithwaite and Braithwaite, 1997; Braithwaite and Japp, 2005), has focused on patient narratives of various contested conditions (e.g. Defenbaugh, 2013; Groenevelt, 2021; Japp and Japp, 2005; Paxman, 2021); yet, there has not been enough attention paid to the discourse of students with invisible disabilities in a higher education context. Previous research has shown that many invisible conditions are diagnosed in people in their 20s, when symptoms prevent the student’s full participation in university, affecting academic and social aspects of their lives, which may be due to the particular demands of university (see e.g.…”

Giving Care a Platform: The Use of Instagram by Mothers of Children with Chronic Illness

“…Together with the sense of 'relentless responsibility' that comes with caring for their Instagram feed and managing online relationships, the mothers interviewed for this study felt additional pressure to align their Instagram engagement with social media norms of (self-)presentation, including positivity as a marker of adherence to 'proper' caregiving (Groenevelt 2021). Concessions from the women in this study that they sometimes want to give up on their Instagram and even on their care, further demonstrate the gravity of the bind they find themselves in.…”

Chronicling the chronic: narrating the meaninglessness of chronic pain

“…However, since pain is a phenomenon that is hard to communicate ( Scarry 1988 ), it is not easy to create pain narratives. Recent studies have shown that more flexible, intermodal and interactive types of narrating, as afforded by the internet and social media, might facilitate pain storytelling ( Gonzalez-Polledo and Tarr 2016 ; Groenevelt 2021 ; Ressler et al 2012 ).…”